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Don’t Just Talk … Be Heard — Speaking Truth to ICER

Jun 11


Duchenne MD patients and caregivers! Your voice is needed right now. More than ever.

A nonprofit that wants to impose a mathematical formula on who can access lifesaving treatments is taking aim at the Duchenne community. We can’t let them do that.

The Institute for Clinical and Economic Review (ICER) recently released their preliminary Draft Evidence report for Duchenne therapies. This report isn’t an independent review. It is a document of danger. It takes a direct aim at the most vulnerable patients, their families and loved ones. We are calling on everyone in the Duchenne community to make their voices heard. This webinar will show you how.

We will be talking live with Dr. William S. Smith, a Visiting Fellow in the Life Sciences at the Pioneer Institute — a public policy research think tank. Dr. Smith is going to walk us through who ICER is and why they matter. This is how we fight back.

We’re taking just 30 minutes to show you how to share your story and tell the truth to an organization that describes itself as the “nation’s independent watchdog on drug pricing.”

Here’s some of what you’ll learn:

  • For Your Consideration — An overview of the Draft Evidence Report and what we believe is missing from the equation — hint: actual patient voices.
  • Submitting a Comment — How to submit a comment/story to the ICER team in the appropriate format and deadline
  • Speaking to ICER — You’ll hear from a patient who spoke publicly at an ICER meeting and learn how to prepare
  • Talking to the Media — How to engage with national or your local media around these important issues

Bring Your Questions — we will save 10-15 minutes at the end of the presentation to answer them!



Dr. William S. Smith
Visiting Fellow in the Life Sciences @Pioneer Institute

Dr. Smith has 25 years of experience in government and in corporate roles. His career includes senior staff positions for the Republican House leadership on Capitol Hill, the White House Office of National Drug Control Policy, and the Massachusetts Governor’s office where he served under Governors Weld and Cellucci. He spent ten years at Pfizer Inc as Vice President of Public Affairs and Policy where he was responsible for Pfizer’s corporate strategies for the U.S. policy environment. He later served as a consultant to major pharmaceutical, biotechnology and medical device companies. Dr. Smith earned his PhD in political science with distinction at The Catholic University of America.



Terry Wilcox
Co-Founder & Executive Director @Patients Rising

A passionate advocate for patients with cancer and other serious diseases, Terry Wilcox is Executive Director of Patients Rising, a non-profit patient education and advocacy organization that helps patients get access to essential diagnostics and the treatments they need. Terry and her team engage the patient community, along with physicians, health policy experts and allied healthcare professions, to develop realistic, solution-oriented discussions so those with life-threatening and chronic diseases will have a voice in shaping policies that will improve access to quality care.

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